Fell ill 1987 and was diagnosed chronic fatique/m.e.
Currently I believe I have central hypothyroidism and hashimoto's running concurrently. Had auto immune attack on thyroid at end of June 2021.
Have thyroid Perioxidase antibodies showing 13.3.20 and 24.2.22.
Thyroid readings for central hypo suggest a pituitary tumour, but not showing on mri scan, though wasn't done with contrast dye.
T4 readings have been :
26.4.88 148nmol/L (50-162), 87.5% through range. T3 was 68.42%.
10.4.89 114nmol/L (55-145), 65.56%
17.2.20 10.6 pmol/L (12-22), Minus 14%
13.3.20 10 pmol/L (12-22), Minus 20%
24.2.22 5.5 pmol/L (12-22), Minus 65%. T3 was 6.5 pmol/L (3.1-6.8) 91.89%
12.5.22 8.4 pnmol/L (12-22), Minus 36%. After starting levothyroxine 25mcg on 8/3/22.
Since an adult in my 30s (now 64) feet have changed from size 6 to size 9. Suspect a somatotrophin, growth hormone secreting tumour causing acromegaly.
Private genetic testing done 2021 confirms I do not have Marfans Syndrome, which is similar to acromegaly.
Have 2 thyroid nodules and bloods just back showing significantly high prolactin and serum cortisol, though when phoned for results was told they were okay.
9a.m.serum cortisol , 24/6/22, 593 nmol/L ( 133-537), and prolactin 564mU/L (0-499) Both marked as significantly high as per different gp reception member of staff on following day. Patient access form filled out to receive as a paper copy at a future date.
As forum has predicted previous folate, b12, ferritin and Vit d results problematic though not according to GP.
e.g Reading 6.12.04
serum ferritin 22ng/mL (14-186) and
serum folate 5.5ng/mL (2.8-12.4)
serum b12 201ng/mL (155-1100)
Have 2 Vit d readings
17.2.20 77nmol/L (30-170)
24.2.22 82nmol/mL (30-170)
A thyroid result for 2014 has been removed from the gp system the gp reception staff use for patient access request information, which is illegal.
In 2014 , I had large xantholasmas above and below both eyes. Cholesterol was high at 6.5. At a hospital eye appointment (referred by optician at Specsavers) for suspected pituitary tumour, blood pressure top reading was 211.
I am really curious as to what my thyroid readings were.
I have a page of thyroid results written on a sheet of paper i would like to post as a screenshot? but despite looking up how to do this, don't think I will be able to. I will try to post this way, as will take ages to type out.
If page of results from 1988 do not appear with this, will have to type manually.
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I would focus more on results in recent years and worry less about results as far back as 1988. You mention high thyroid anti bodies but dont say what the actual result was. Antibodies can and do fluctuate widely as with Hashis the body gradually attacks the thyroid. Being diagnosed with CFS/ME sadly is common. I was too when really it was my thyroid failing that was and is the problem. This is because the TSH range is very wide and doctors are instructed not to treat until that goes over 10. The actual thyroid hormones are often not tested or only the ft4 is but not the ft3. To get a complete picture you really need your TSH, Ft4 & Ft3 plus the antibodies tested at the same time. Getting your vits and mineral optimal is very important for making best use of our thyroid hormones and frequently are low in hypothyroidism. GPs are not well informed on vits and minerals and will say if within the range all is well, even if low in range. Lastly if you are Hashi then often gong gluten free can help. Not everyone but many report improvement so worth trying for 6 months.
I was interested in old results as one of the things I wanted to see was if TSH was indicating a healthy thyroid at start of illness, and if it had changed to be consistently over 1. 10.4.89 0.8 (0.3-3.8 mU/L) 14.29%
6.12.04 0.84 (0.3-4.2) 13.85%
17.2.20 1.84 (0.27-4.2) 39.95%
13.3.20 1.8 (0.27-4.2) 38.93%
22.6.20 2.75 (0.27-4.2) 63.1%
24.2.22 4.02 (0.27-4.2) 95.42%
Then started 25mcg levothyroxine 8.3.22 and
12.5.22 1.87 (0.27-4.2) 40.71%
Unless I'm mixing things up again it looks as though I did at one time have a TSH under 1 which supposedly would be a healthy thyroid.
I was , however very ill at the time TSH was under 1.0.
Was trying to work out if illness was thyoid from day 1 of illness, or if thyroid problems came later.
The two measurements of thyroid antibodies were not high. I just had them. Both thyroid perioxidase antibody readings are the same, at <9iu/mL , (0-34), 13.2.20 and 24.2.22. They hadn't been tested for before this.
It is the same with vitamins. I was looking at old readings to see if they were sub optimal.
It is so difficult to make sense of it all. What is clear is that the forum advice re . vitamins is spot on. It seems to be the case that you can eat a very, very healthy diet but not derive optimal levels from doing so. As the forum advises, we are still low in vitamins.
"The two measurements of thyroid antibodies were not high. I just had them. Both thyroid perioxidase antibody readings are the same, at <9 (0-34) 13/2/20 and 24/2/22..."
This is a clear 'negative' result , it would be very unusual to find anyone with '0' TPOab , they have a role in the normal functioning of the immune system .... it's only if you find you have over 34 that it becomes relevant ..... <9 (0-34) ...... means you could have 0.00 or 8.99
"< " means "this test is not sensitive enough to tell the difference between 0 and 9" .... but either way, you don't have an abnormal/ elevated / positive level of TPOab ..
(this doesn't rule out having autoimmune thyroid disease , as some people with hashimoto's have elevated TGab ,with negative TPOab , and some people have no evidence of raised antibodies but evidence of characteristic hashimoto's damage is seen on ultrasound scan)
" ...it looks as though I did at one time have a TSH under 1 which supposedly would be a healthy thyroid..."
'under 1 means healthy' .... this is ONLY true IF there's nothing wrong with the hypothalamus/ pituitary's ability to produce TSH appropriately in response to low thyroid hormone levels... but from your later results we know there was definitely something wrong with TSH response in 2020 / 2022 ,so it's possible your TSH level was not be trusted back in 1988/89 either .. unfortunately , due to lack of Free T4 test we cant be absolutely certain if your TSH in 88/89 was 'appropriate' or not .
Those TT4 results of 87% and 68% do both look perfectly ok , but it is theoretically possible to have 'low' Free T4 with 'ok' looking TT4. (i don't know how 'likely' it is, but it's possible )
Most T4 is 'bound' (to thyroid binding globulins and some other stuff) to carry it round the body ... only a very little bit of T4 is actually 'free'/not bound'
Total T4 test measures both the bound and the free together.
Total T4 is like measuring all the oil inside an oil tanker , its massive.
but Free T4 is like a little tiny jam jar of 'available' T4 which is floating around inside all that bound T4 in the oil tanker .. if the jam jar itself is nearly full , then Free T4 is high .. but if the jam jar is nearly empty, FreeT4 is low.
.... you can in theory have a nearly empty jar of 'free T4 floating around in an oil tanker that is fairly full of 'bound' 4 ...... so you can't assume Free T4 was ok just because Total T4 was ok.
So these could EITHER be genuinely fine /no problem with your thyroid ... OR if your TSH is already not to be trusted at this point ,then the problem could already be developing here.
The Total T4 levels do fall from 87% to 65% which could be an early indication of a developing problem , but it could also be part of the normal variation of TT4 levels .... if we had another TT4 result from eg. a year later, and it was 40% ,then that downward trend would be a strong indication that thyroid was not making enough T4 anymore for some reason ie Thyroid fine but TSH not asking it to make more T4 , or Thyroid damaged and unable to make enough T4 ... but as we don't have another TT4 result we really don't know what was happening here and there's no way to find out now .
So here, IF the TSH is to be trusted .. there seems to be 'no problem' with your thyroid ... but how do we know your TSH is to be trusted ? .. we don't .
So here , clearly a problem with low FreeT4..and this test is the first real clue that perhaps your TSH is not to be trusted , because you would expect it to be significantly higher than it is ,in response to that low T4.
Sadly no use whatsoever .. since we already have reason to doubt the truthfulness of your TSH . This was where they really messed up , your FT4 should have been tested again at this point , as they knew you had 2 previous low fT4 tests. and therefore they should be considering central/ secondary hypothyroidism at this point , meaning fT4 test need ordering specifically ,as well as standard TSH. and lab should have been chased up by GP if it wasn't done.
... further proof your TSH is not behaving appropriately ,because you would expect the TSH to be much higher with such an extremely low fT4.
? Thyroid is possibly making more T3 to try and compensate for low T4 .. as seen in early thyroid failure .
or ? if your nodule is 'hot' (as opposed to a normal nodule that doesn't do anything) perhaps the T3 is coming from that. but you would need the right sort of uptake scan to know if your nodule is doing anything or not.
fT4 has improved , due to levo . TSH has fallen due to increased fT4.
TSH now appears to be 'normal ' ..... but we know it was inappropriately low for the previous 3 tests , so its reasonable to assume it's not to be trusted in future and so your dose should be adjusted using mainly FT4/ fT3 levels for information , not just TSH.
So "whats wrong with your thyroid and when did it start" ?..... A problem with your TSH production seems a much more likely explanation than hashimoto's, especially since your TPOab are negative .
Your nodules might be complicating it , or they have nothing to do with it, lots of people have thyroid nodules that do nothing and don't pose any risk for cancer, or cause any real problems.
....... if one of them is producing just a little bit of 'extra' T3 . it might be doing you a favour at the moment ... you wont be able to get that good a level of T3 from your levo ...
I suggest you get your own thyroid tests done in future to make certain that TSH / fT4 / and fT3 always get done when you need them . it's about £26 from MMH using TUK discount code .... you shouldn't have to but ... it' s easier that arguing with a brick wall and then still having them missed off because the lab said no, or the next doctor didn't get the significance .
Thank you so much tattybogle for taking the time to go through all that. It really, really is greatly appreciated, and may just stop me making a right fool of myself when I go into battle. I need to read it again and again , but yes, I think you seem to have a good handle on what is and has been going on. I don't. I just don't have the expertise that you and other forum members have, to make proper sense of it all. And, I am really keen to understand how my illness came about, and what has caused it. You seem to have instinctively picked up on that, for which I am beyond grateful.Acromegaly usually starts in the 3rd decade and goes unnoticed for many years. I fell ill at 30 and am now 64.
My feet, in that period, have risen from size 6 to a 9. I have casts of my feet, taken in my 30s when I got orthotics made when , without them , I think I would have ended up bedbound or in a wheelchair. There is definately, a full 3 shoe size difference now.
I can actually prove it because of the casts (no idea why font or whatever has changed. I must have hit a button somewhere)
Head and fingers don't seem to have changed in that period.
Blood results are suggesting a pituitary tumour, and central hypothyroidism. Change in feet size may be suggesting a pituitary tumour of the somatotrophin growth hormone -secreting variety. Nothing showed, tumour wise, on MRI brain scan. It was not , however, done with contrast.
I paid privately last year for genetic testing which ruled out Marfans Syndrome. I am hypermobile but seemed to be skirting the outside edges of Marfans. I am tall for someone of my generation at 5 feet 8 and a half inches, but not excessively so.
I may have EDS hypermobility type, for which there is no genetic test, according to a private specialist.
Marfans and acromegaly are very similar. I saw NHS genetics re. Marfans in 2014. They don't even have the expertise to know about flexible flat feet. They don't look flat but are flat feet, and common in a hypermobile person as I pronate too much when walking, and it flattens the arches.
Had an appointment on Wednesday for lumps and bumps clinic, as GP asked endo about something and she said if nodules were abnormal , when eventually scanned , they should be referred to lumps and bumps clinic.Referred there because of U2 nodules I previously wrote about. I paid for a thyroid ultrasound in May as had been on a waiting list for ultrasound from September2021, and NHS were saying I realistically wouldn't get one until 2023.
Turns out, lumps and bumps clinic is about a 2 week waiting list, and if need ultrasound they do it there and then. E.N.T. surgeon said he had just sent someone down the corridor for a scan.
My ultrasound results paid for privately, were blurred on his system and all he could make out was that I had U2 nodules. Irrespective of size, which he couldn't make out, and wasn't bothered about, he said they could just be left. No biopsy, no monitoring. He said that I will undoubtedly develop more. He said I could easily develop a 12cm nodule OVERNIGHT, and if I did they wouldn't do anything . I asked if levothyroxine would shrink them as I had missed one tablet and left side of my neck had swollen up like a balloon, which indicates to me levo has an effect on them. He said that that is outdated thinking.
I attended that clinic just to be told he didn't need to do anything now, or in the future as they are U2.
U2 are actually abnormal, but considered benign, but have c.20% chance of becoming cancerous.
I mentioned Central Hypothyroidism and gathered from him that TSH , not FT4 , is what you go on. I rolled my eyes and saved my breath.
I did , however, take along a copy, which can be googled from the internet, of :
NHS Lanarkshire Clinical Biochemistry. Central Hypothyroidism Primary Care Guideline. Adults with low free T4 and normal TSH levels. I am in NHS Lanarkshire.
I asked who he would be reporting to. Endocrinologist. He told me I have been referred to her as per my request to GP, although I did tell the GP that Endo didn't seem competent so far in her advice to GP, and that it may be a blessing in disguise if she refused the referral, and that she should be ashamed of herself. Pointed out to GP that Specsavers optician referred me to eye department at hospital 2014 for suspected pituitary tumour, and should have been given brain MRI and Endo appointment, and wasn't.
Patient access to my medical records that I received the afternoon of the lumps and bumps clinic attendance ,after a wait of 4 weeks, has 2014 missing, hence can't get thyroid result for 2014.
Gave E.N.T. surgeon at clinic a copy of NHS Lanarkshire Central Hypo Guidelines, with parts relevant ticked, and additional info., like size of feet change . I asked him to make sure she got it as she may find it helpful. I said I really didn't know how she would take it, whether as a gentle nudge or a kick up the backside. I said that at this point I really don't care which way she takes it, as I really have had quite enough, since I have been ill now since 1987.
That being the case, I really didn't appreciate being told to book a blood test (turned out to be for acth and prolactin), NO RUSH. I said I didn't know if the NO RUSH was the GP's choice of words or the Endo's, but that it adds insult to injury.
Turns out my prolactin and serum 9a.m cortisol are both significantly high. Prolactin can seemingly make me hostile and aggressive.
The comment on the lab report 12/5/2022 is "Previous requests suggest this patient is on thyroxine.Is this still the case? If patient not on thyroxine, this pattern may be consistent with non-thyroidal illness or on rare occasions hypopituitarism. Suggest repeat in 6 weeks to confirm unless otherwise clinically indicated.
On 12/5/22 I am still on thyroxine, but only 25mcg. I skipped 1 tablet and decided I wouldn't be skipping anymore.
At this point GP then saying I shouldn't be on thyroxine, they won't be doing any more bloods and I have been referred to Endo, and if bloods need done, she will do them. I did point out that the waiting time for Endo is likely to be c.3years, and am I just supposed to sleep for the next 3 years?
From patient access I can see I have been on a 3 month trial of levo, except that I was never told this. I was told I had an underactive thyroid and the treatment for it was thyroxine.
The first sentence of the guidelines says that finding an ft4 concentration below reference range, together with a tsh in the reference range, is a common occurence. If you google the guidelines you will see that they are aware of central hypo, but probably only rarely investigate it.
Countdown is on now until I run out of Glenmark Levothyroxine. Don't know what my chances will be of getting any more.
Many thanks again for your sage words. Any help in stopping me making a complete fool of myself very welcome!
a quick thought,... (will read the rest of it properly tomorrow, my brain works better in the mornings)
But perhaps the following reasoning would help your chances of getting GP to continue levo and increase your dose.
........
If your levo prescription was 'a trial'...what was it a trial to try and achieve?.
it can't have been the usual ~"a trial of levo to see if getting your TSH into range made you feel better" ....... because your TSH wasn't over range anyway.
So presumably it must have been "a trial of levo to see of getting your extremely low fT4 into range made you feel better".
And if that was the reason for the trial , how can they stop the trial before they have achieved the objective ? .... your fT4 isn't in range yet on just 25mcg ... so to see if low fT4 was the cause of how bad you feel they would have to increase your levo dose to get fT4 into range before they could possibly say if the trial was a failure and stop it , or a success and to continue on levo.....
Hope that still makes sense on paper .. it made sense in my head. will have anther look tomorrow
Many, many thanks. Makes perfect sense. I wasn't even told it was a trial.Ukranian locum can't communicate properly I'm afraid.
GPs seem to be relying totally on instructions or red flags on lab results.
Lab results when ft4 under range are telling gp to check again in 3-6 mths if abnormality persists. If persisted, GP being instructed to speak to duty biochemist.
During covid 2 bloods samples were taken June 2020 by nurse sent to house to check ft4, because lab had said so.
Lab did not do ft4 twice that month, and GP was ignoring direction of speaking to biochemist.
This was when I got shouted at by GP because I pointed out that missing ft4 results being marked no action required in GP surgery, despite me having been lettered in March to get ft4 rechecked in 3 months time. I was shouted at, told there was nothing wrong with my thyroid, and not to ask that it be checked again.
GP is negligent, but lab seems to be too, as they should have on record they have instructed GP that ft4 needs to be rechecked, but seem to be ignoring because GP not highlighting that it is per their advice.
I seem to be the opposite of you. I do not function in the morning at all, more like 2p.m. in the afternoon.
a list that may help with clear/ concise communication with GP/ endo :
~ Concentrate on the low fT4 aspect, as there is no evidence you have autoimmune/ hashi's .
~ "very low fT4 with inappropriately normal TSH and ? acromegaly" is where you should get them to focus..... don't confuse the issue with too much other history or you will loose them ,and frustrate yourself ,which just allows them to chuck you out for coming across as 'aggressive'
~ Forget about the nodules for the time being they've been looked at and U2 is not a concern at the moment.
~ As there is no way to see whether your thyroid was ok or not before this result: 17/2/20: TSH 1.84 (0.27-4.2)...fT4: 10.6 (12-22) .... don't waste your time discussing anything 'thyroid' before that date.
~ Write a letter to GP so it's clearly on record (and you can't end up shouting ) and focus on their inadequate follow up re. the current 'low fT4 situation' as you wrote in last nights reply.
point out that fT4 was extremely low before Levo here : 24/2/22: TSH 4.02 (0.27-4.2)...fT4: 5.5 (12-22) ............................. fT3 : 6.5 (3.1-6.8) 91.89%
point out that fT4 is still very low on 25mcg levo : started on levo 25mcg on 8/3/22.
12/5/22: TSH 1.87 (0.27-4.2) ...fT4: 8.4 (12-22)
( first double check that ft4 result does actually say 8.4 and not 18.4 as it would be embarrassing to kick off about low fT4 on levo if it's actually in range )
in letter , request to stay on levo until you see endo (with appropriate dose increase to get fT4 into range) as it seems unreasonable to leave you with such a low fT4 while waiting for your referral to come through.
" ....you understand the pressures they have been working under , and you apologise if you have seemed aggressive on occasion , but you have been very frustrated by the lack of consistent follow up re. your extremely low fT4 results" ... blah blah .. a bit of 'schmooze' will do no harm .
Much appreciated! Think you are absolutely right. I definately am too long-winded by nature, so your advice is spot on.Definately ft4 8.4 pmol/L (12-22) with exclamation mark, and coded LL, which must be something to do with being low. Also in different colour to highlight.
ok , so that comment in those central hypo guidelines you referred to re: 'below range fT4 with normal TSH being quite a common finding' ....
don't get fobbed off with this by GP's ... yes , it is probably true that a slightly below range fT4 is not an uncommon finding in perfectly healthy people with no thyroid problem .
But 5 is extremely low.. and that level of fT4 will not be a common finding at all ... so endo should definitely be having a look at that with a view to ?central and it is probably why you got the referral.
Even 8 is significantly lower than you would expect to see even in many 'overtly' hypothyroid people . (people not yet on levo who had been diagnosed hypo based on low fT4 / high TSH)
Correct .... (!! / L / highlight) are from lab and are indicative of (out of range /low /unexpected) results.
High excitement! Does the following make you officially a genius, Tattybogle?
Blue Horizon Thyroid Genetic test results just in! Not even properly awake yet.
D101 Thyroid Hormone Activation AMBER CT:
The T allelle on rs11206244 is associated with lower D101 activity and therefore likely decreased clearance of rT3 from circulation, and lower conversion of T4 to T3.
PDE8B- TSH Signalling is RED. AA. The A allelle on rs4704397 is linked to reduced thyroid sensitivity to TSH stimulation.This could result in higher TSH levels in order to produce normal levels of thyroid hormones (T4 and T3).A clinical test would show high TSH levels and normal to low thyroid hormones.
TRHR- Thyrotropin Releasing Hormone (TRH) Receptor . RED :GG. The G allelle on rs3134105 is associated with a less responsive negative feedback mechanism. Carriers of this genotype may show higher circulating TSH:T3/4 ratio due to delayed reduction of TRH andTSH in the presence of healthy thyroid hormone levels. This may mean that the body is subjected to a less efficient response to changing thyroid hormone requirements.
TSHR-Thyroid Stimulating Hormone (TSH) Receptor: RED.AA. The A allele on rs 179247 has been linked to the presence of thyroid stimulating hormone receptor antibodies TRAb), associated withincreased risk of developing Graves disease (GD).
GD is a form of hyperthyroidism, the most common symptom being bulging eyes.
Other attachment which came with report I do not know how to open. Anyone who has done this test, can you help?
Still trying to wake up!
Have edited the above a few times as mixed up a few things as was still half asleep. If anyone read this before 15.43 p.m. 8/7/22, some of it was wrong!!!
Wua your t4 readings are a mix of total t4 and free t4. You need to focus on free t4 . Putting the two different results together will confuse you and you are comparing 2 different things. This is why your t4 goes from the high pluses into the minuses which looks dramatic but they are not the same thing being measured.
Just wondered what the point is of testing total t4? Is it useful for things not thyroid related?Just trying to understand. I know one of the total t4 readings was done by rheumatologist.
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